Charity WALK will Raise Awareness and Funds for Incurable Brain Condition

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It's not too late to join more than 300 participants who will WALK this Sunday to raise awareness and funds for the Hydrocephalus Association (HA), the national's largest non-profit dedicated to supporting the 1 million Americans living with hydrocephalus.

WALK for Hydrocephalus
Our hopes are that more research will be funded and result in finding a cure, or at least develop better ways to manage the challenges related to hydrocephalus.

More than 300 walkers representing local families, schools, corporations and organizations are expected to mobilize for the Hydrocephalus Association’s (HA) Minneapolis/St. Paul MN WALK, which attracts participants from Minnesota, Wisconsin, Iowa and other surrounding areas. The event will take place this Sunday, September 15, 2013, at North Community Park (field 3), 13750 Bittersweet Lane, Rogers, MN 55374. The WALK begins at 10:00 am. Walkers can check in starting at 8:30 am. Money raised will support the HA’s national goal to raise more than $1.1 million for critical hydrocephalus research and educational and support program services.

“My daughter, Lana, was born with hydrocephalus, but was not diagnosed until 2 years of age," shares Heather Sorenson, WALK Co-Chair. “She had a shunt placed shortly after her diagnosis. She has other disorders, such as a Type 1 Chiari Malformation, that are connected to hydrocephalus. She still has the shunt that was originally placed, and has not yet had a malfunction. Getting through the shock and periods of uncertainty following diagnosis would not have been possible without the resources and support provided by the Hydrocephalus Association. There is no cure and the only treatment option requires brain surgery. Funding research to find a cure is critical.”

The Hydrocephalus Association began funding research in 2009. Since then HA has committed well over $3 million to research, making it the largest non-profit, non-governmental funder of hydrocephalus research. Last year, Hydrocephalus Association WALKs raised more than $1 million from over 10,000 walkers participating in 30 sites around the country. All Hydrocephalus Association WALKs are volunteer initiated and volunteer coordinated.

“My niece, Hannah, acquired hydrocephalus in conjunction with brain tumors that developed between 3 and 5 months of age. Within hours of diagnosis she was admitted to Gillette Children’s Specialty Hospital for surgery to remove these benign tumors. Hannah underwent another surgery to place a subdural shunt to assist in draining the excess fluids between her brain and skull,” recalls Tonja Niemi, WALK Co-Chair, as she shares her family’s journey with hydrocephalus. There have been several medication adjustments and surgeries in the past 2 ½ years to manage Hannah’s related health conditions of epilepsy and cerebral palsy. It is common for people with hydrocephalus to be impacted by additional chronic conditions.

“While she appears to be a normal toddler to the average person, Hannah’s life revolves around special accommodations and medical appointments. Speech, physical, and occupational therapies have been a big part of her life thus far. It is unclear why Hannah developed tumors and hydrocephalus. The ambiguity can be frustrating and confusing, while the life experience of dealing with chronic health conditions can be overwhelming. Our family, our friends, and her daycare providers have benefited from the resources and support provided by the Hydrocephalus Association. Through an improved understanding of how hydrocephalus impacts Hannah, she is receiving appropriate care and development. Our hopes are that more research will be funded and result in finding a cure, or at least develop better ways to manage the challenges related to hydrocephalus,” states Niemi.

This year’s Minnesota WALK will include light snacks, music, children’s activities including games, face painting and temporary tattoos, educational booths, and a special guest appearance from the Minnesota Wild Mascot, NORDY. Superior Sound is scheduled to DJ the event. The WALK starting line ribbon will be cut by a member from the 2012 WALK Top Team, “Elsa’s Pack,” comprised of 57 team members who collectively raised $5,600 last year. Sponsors for the Hydrocephalus Association’s 4th Annual Minneapolis/St. Paul MN 2013 WALK include Medtronic, Aesculap USA, and the local Rogers Dairy Queen, who will provide coupons for discounted dining. Those diagnosed with hydrocephalus will receive a special HA bandanna.

While there is no charge to register for the WALK, participants raising $50 or more will receive a HA WALK T-shirt. Please contact Heather Sorenson at MNHydroWalk(at)gmail(dot)com for more information, to volunteer your services at the event, or to become an event sponsor. There is still time to register to participate as a team or an individual walker by visiting http://walk4hydro.kintera.org/minneapolis . You can also call the HA national office at 888-598-3789 Ext. 12, or via email at walk(at)hydroassoc(dot)org.

About the Hydrocephalus Association
Founded in 1983 by the parents of children with hydrocephalus, the Hydrocephalus Association is the nation’s largest and most widely respected organization dedicated to hydrocephalus. The Hydrocephalus Association's mission is to eliminate the challenges of hydrocephalus. For more information, visit the Hydrocephalus Association web site at http://www.hydroassoc.org or call (888) 598-3789.

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Amanda Garzon

Heather Sorenson
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